What to do? Contemplating treatment options?

Iwantmylifeback

Hi, K here. I'm new to the forum. 49 year old mom of two boys, 19 and 21. I was recently diagnosed in April with IDC and currently recovering from surgery. I had 1 of 2 nodes involved. On my initial visit to my MO, he initially was recommending a full round of chemo (ACT) for 20 weeks followed by radiation and hormone therapy (Tamoxifen) I subsequently had a Mammaprint which came back low risk. During my follow up appointment with my MO to discuss the Mammaprint results, he is now suggesting that I could forgo the chemo treatment for radiation and hormone therapy alone. That would put me at 93% five year non reoccurrence. He also suggested a milder chemo of TCX4 that would get me to 99% with the radiation and hormone therapy.

I have many fears:

• The side effects of chemotherapy such as leukemia
• Side effects of tamoxifen such as uterine cancer
• The accuracy of Mammaprint
• If I opt for a less aggressive treatment or for something more natural, am I putting myself at a higher risk for reoccurrence

I am awaiting the results of the BRCA test.

I'm just really struggling trying to decide on the right treatment for me. Help!

K.

Cowgirl13

K, I'd go for the 99%.

RMlulu

K - ah, decisions. While you are waiting for your test results visit your breast center to attend a BC support meeting.

I did before making decisions and it helped. Mine meets weekly and is lead by the head nurse and oncology social worker. It was good to hear others share and find others facings which path to take and others done with treatment who could give perspective and balance.

Only you can decide what is right for you. Ask question and ask again...and again.

Visit the threads that discuss your concerns.

Check out all services your BC center offers and go...yoga, medication, massage, nutrition, exercise, support, LGFB...all

Discuss your concerns with the oncology social worker, your ob/gyn, get second opinions, and fa

Then breathe...listen to your heart...your gut...you can do this...breathe...one day at a time.

In your pocket

(((Hugs)))

Cindy

jenn32214

I'm with RMlulu. Just my opinion, if I were in your shoes I would go with chemo, because you show Stage II, grade 2 and a lymph node.

But if the BRCA comes back negative, go with "milder" chemo

Anonymous

Hi Iwantmylifeback,

You sound a bit like me in terms of diagnosis. I have not been staged yet but I seem to have similar results as you do and so think I am possibly going to be staged as IIA too.

I am living in UK, Scotland. So I am under NHS. At my meeting last week with my oncologist, I was told I had one node involved out of the two that were removed and so because of that I would be receiving chemo. I was told that Chemo (FEC), followed by Radiotherapy and then 5 or 10 years on Tamoxifen would be the best route to make sure I definitely collected my old age pension. The oncologist did not do any genomic tests for me as apparently we don't use these tests much over here due to there being questions over the accuracy of them. I think you are lucky that you DO have these tests done as they are just a wee bit extra info to help you make your decisions.

Anyway, the result of my meeting was I was pretty much told chemo was what I would be getting then Radiotherapy and pills. I wasn't realy given any option or questions about whether I wanted this, just really that if I want to be here chemo is needed to 'flush out' anything maybe, although not always left behind.

I have been anxious about doing chemo, and it is almost 5 months treatment however, I am keen to get it too and tolerate the awfulness of it as long as it will give even greater peace of mind.

So really just to give you an idea of what we are being told across the pond when sitting with same diagnoses as you have.

I was told if I took chemo and rads and Tamoxifen then I would have a 1 in 10 chance of a recurrence.

Dolly

PS out of interest can you tell me when they say 1/2 nodes are involved does that mean I had two sentinel lymph nodes? I thought people had just the ONE SLN...but according to reading some people have two or three. How many of your nodes were removed in total?.

CJSharma

Honestly - I'd get a second opinion. Lymphnode involvement would make me wary of skipping chemo all together, but I'm not a doctor.

etnasgrl

I would be scared to skip chemo with lymph node involvement. Granted, I'm not a doctor and won't pretend to be....but I am someone who has been through cancer.
I 100% understand your fear of chemo. I too am terrified of all the possible, life long side effects, so I understand why you feel the way that you do. However, I also know that I would have ZERO piece of mind if I skipped chemo when I had lymph node involvement. Piece of mind is crucial to me! Granted, none of us know what the future holds and if the decisions we make are right....but doing all that we can to prevent a recurrence or mets down the road can give us some form of piece of mind.

I would get a second opinion. Ask as many questions as you can think of. Get all the info you can. Then, make your decision. At the end of the day, it all boils down to doing what you feel is best for you.   

ladsgma

Dear Iwantmylifeback:

I am in the same situation as you with the IDC and surgery. My personal choice was not to have chemo because it didn't feel right to me. I decided to try to reduce my risk by eating whole foods and seeing a nutritionist, and working on my stress with therapy. When the MO called I didn't hesitate in saying no chemo, but again this is a very difficult and personal choice. I wish you the best.

Artista928

The thing is it's not just lymph node involvement. There are folks who had 0 and are now stage IV. Some can get in the bloodstream. Chemo is designed to hopefully get all those buggers out there while rads is to hopefully take care of stragglers left behind in the area itself. I had micromets in a SN, so not even a full on node involvement. With the 7 cm size of my tumour it became clear chemo and rads. So since there is no definite do this and then you'll get this result, get second opinions if you are still on the fence and do what you feel is right, what you feel in your gut that you won't be thinking hopefully that I should have/shouldn't have done this.

Hopeful82014

Dolly, it's certainly possible (and common) to have more than one sentinel node. I don't think there is an upper limit; you have as many or few as you have. (I had five.)

exbrnxgrl

Nodes come bundled in little fatty wrappers. Until they are unwrapped by the pathologist, the number is unknown, though sentinel nodes tend to be fewer in number that what one finds with axillary node clearance.

As for tx decisions, there is no clear cut answer. Asking lots of questions and getting a second opinion can provide a broader perspective, though nothing comes with a guarantee. One consideration when using natural therapies is how you feel about anecdotal evidence vs. scientific evidence. Some of us are not comfortable with one or the other, so that is clearly personal choice. As to the side effects of conventional tx, you have to weigh the good against the bad. Are the se's common or low incident? Temporary or permanent? Have you been informed about all possible se's? And, at the risk of repeating myself, there are no guarantees with any tx you choose. Wishing you the best.

barcelonagirl

Hi Iwantmylifeback,

There was a recent study released by the EORTC called MINDACT. It showed that MammaPrint patients who were clinically high (up to 3 positive nodes, tumor size <2, grade 3 tumors ) and were MammaPrint LOW could SAFELY AVOID CHEMOTHERAPY! The moderators of breastcancer.org posted an overview of this information Under Breaking Research News "MammaPrint test can help decide who can skip chemotherapy" Take a look at this information, as it will provide insight to many of the questions you have about the test as it pertains to your diagnosis.

Wishing you all the best in your decision process. Most importantly, is that YOU feel good about the treatment choice!

Optimist52

Hi has your MO talked about getting an Oncotype DX test? You would qualify for this even with one node positive. It's been a very valuable tool for many of us.

Sjacobs146

I had a very similar diagnosis to yours. I was on the borderline of needing chemo. My Oncotype score was in the intermediate range, one positive node, plus relatively young age put me over the top as far as my MO was concerned. I decided to have the chemo because I know that if it ever comes back, I will need to know that I did everything possible to prevent it else I would never be able to forgive myself. But that's me, others feel differently. I am now almost 1 1/2 years past chemo, and I fell pretty much back to normal. I'm glad that I did Taxotere and Cytoxin. My doc decided not to do Adriamycin due to the leukemia risk. You need to really examine your feelings and go with what is best for you and your peace of mind

fightergirl711

As others have said here, I'd consider getting a second opinion. Just for peace of mind. Your oncologist and surgeon as professionals should both welcome a second opinion. Also, you don't want any regrets down the road, you want to be completely confident in the decisions in your treatment. In terms of what kind of treatment, I can't really say, but it sounds like your doc recommended chemo 2x, before and after the test. Frankly, I always go for the extra 1%. But this is a very personal decision, I would also ask about that study barcelonagirl refers to. Keep us posted!

ml143333

As for me, I would go for the 99% option. Chemo is definitely doable. I worked through mine - had to take a few days off here and there, but it can be done. I don't know the statistics for leukemia from chemo, but I am a year out and okay for now. I am on Femara so I can't speak to the risk of uterine cancer with Tamoxifen.

For me, it was a matter of getting all the facts, talking with my MO, my spouse and praying a lot.

Good luck on whatever choice you make. We are here for you.

Iwantmylifeback

Thanks ALL for your advice and kind words and encouragement. It means a lot.

I wanted to add that my MO discussed with me the findings from the MINDACT study using Mammaprint that Barcelonagirl mentions above with node positive patients.

http://www.breastcancer.org/research-news/mammaprint-can-help-decide-who-can-skip-chemo

Recognizing this is very new, he said that I could consider the Mammaprint results to help decide the treatment for me even with one positive node based upon this new information from MINDACT.

Do I trust it and skip chemo?????

Additionally my MO has agreed to present my case to the hospital tumor board to hear the board's treatment recommendations.

Lastly, my MO has also offered to refer me to Moffit for a second opinion which I plan to do.

KBeee

A second opinion is always important. If you do forego chemo, understand that the assumption of the Mammoprint (and Oncotype) when giving results is that you complete 5 years of anti-hormone therapy. If you choose neither chemo nor hormone therapy, any rogue cell which escaped could grow somewhere else. It is a hard decision because there is no crystal ball. Ultimately you have to get opinions from a couple docs, make a list of pros and cons of each, then make a decision that you feel is best for you. Then do not look back and ask what if....no matter what happens down the road. There are benefits nad risks to all options, so we all just have to choose what we think is best for us. Best wishes.

marge50

I am in a similar situation I have stage 2 2/2 nodes positive. My oncologist recommended tc chemo 4 sessions. I went for a second opinion at a major top 20 cancer center in the USA. I am 50 years old and I too was on the fence. My second opinion helped me make my decision to do the chemo. I feel like I made the right choose I start in June, still need to get my port in first. I went to the message board as you did mine is "chemo no chemo". I got a lot of great feedback the best was getting the second opinion. Good luck and God bless

barcelonagirl

Hi KBeee,

I just noticed that you had mentioned that MammaPrint assumes compliance with Tamoxiten, or another type of hormone therapy. Actually, MammaPrint was developed independently of hormonal therapy. Thus, the percentages can be further reduced (they say by 50%) with the addition of the Tamoxifen or another AI! Oncotype was, however, developed assuming 5 years of Tamoxifen, so that benefit is built in to the statistics.